Written by Jeremy Porteus, Founder and Director of the Housing LIN
As surveys consistently confirm that most people would prefer to die at home, Jeremy Porteus explains how his organisation, Housing LIN, are helping specialist housing providers and local authorities to support residents who are nearing the end of life.
The 2014 VOICES survey of recently bereaved people revealed that 82% of people who had expressed a preference wanted to die at home, while just 3% preferred a hospital death.
Yet only 23% of deaths occurred at home and nearly half - 49% - took place in hospital (1).
Last year the Department of Health published its review of choice in end of life care, a document that confirmed once again most people's preference for dying at their usual place of residence - whether that be their family home, specialist housing for older or disabled people or a care home.
More than half of the responses received in the review's extensive two-month engagement programme focussed on "the place of care and death".
The Choice in End of Life Care Review (2) confirmed that, despite progress, systemic challenges across health, social care and the housing sector can deny people control over where they spend their last days and hours.
Helping housing providers support people at the end of life
My organisation, the Housing LIN (Learning and Improvement Network), has responded to the choice review by adding to its already extensive resources for those working in housing and their partners in health and social care.
As a member of the independent choice review, I was eager for the housing-linked lessons to be shared.
Last year, we published a practice briefing (3) for people managing housing with care so they can improve the experience of their residents nearing the end of life.
The briefing builds on previous work with partners, highlighting how specialist housing providers and local authorities can support people nearing the end of life, their carers and health and social care services.
These measures include:
- training for housing support staff
- housing design
- telecare and telehealth
- adaptations to people's homes that can avoid hospital admissions.
The government's review emphasised that "end of life care is not delivered in isolation", urging the NHS to support staff and organisations whose responsibility it is to deliver high quality, compassionate care.
It noted that as people's level of need increases, they are more likely to require adaptations to their homes (such as walk-in showers or stair lifts) so they can continue to be cared for at home.
In February this year, supported by Public Health England, we published a follow-up briefing (4). This recognised that front-line specialist housing staff are well-placed to additionally:
- identify people approaching the end of life
- discuss their end of life care wishes and help them draw up a living will
be their advocates
- alert other agencies and services
- ensure that tenants are accessing the right benefits and other support services to enable them to continue paying rent and maintain their home.
It also recommends that specialist housing managers should be seeking to support people nearing the end of life at home 24/7.
Collaborating with hospices and others organisations
The briefing highlights where specialist housing with care providers, working closely with local hospices, can offer compassionate care.
For example, Pathways 4 Life, a Midlands based partnership between the Accord group and Age UK Walsall, have teamed up with St Giles hospice to provide an end of life care service in Walsall. The service has two dementia support workers who have been appointed to improve dementia and end of life care for people diagnosed with dementia living in care homes across the borough.
Both briefings signpost readers to a range of case studies and other useful resources on the Housing LIN's dedicated end of life care webpages.
Supporting people to have the dignified death they would prefer is surely among the most noble and decent professional aspiration any of us can have.
Published by eHospice UK on Wednesday, 6 April 2016
- Office for National Statistics. National Survey of Bereaved People (VOICES) 2014. ONS; 2015
- The Choice in End of Life Care Programme Board. What's important to me. A review of choice in end of life care. Department of Health; 2015
- End of Life Care: Information for housing & care providers. Housing Learning & Improvement Network; 2015. Available from: http://www.housinglin.org.uk/Topics/browse/CareAndSupportatHome/EndOfLifeCare
- End of Life Care: Helping people to be cared for and die at home. Housing Learning & Improvement Network; 2016. Available from: http://www.housinglin.org.uk/Topics/browse/CareAndSupportatHome/EndOfLifeCare